The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Progression on Zelboraf – What Next?

Forums General Melanoma Community Progression on Zelboraf – What Next?

  • Post
    rrrule32
    Participant

      Hello All,

      My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

      Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

      Hello All,

      My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

      Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

      Has anyone tried the combo of Temodar + Ipilimumab?  I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up.  When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.

      Any advice would be greatly appreciated.

      Thank you,

      Travis

    Viewing 11 reply threads
    • Replies
        Cooper
        Participant

          You might want to look at the braf/mek combo.  You can see a webinar on it here:  http://www.melanomainternational.org/news/dualtherapy1.html 

          It seems to be more durable than zelboraf alone.  Temodar is a type of dacarbazine and an older drug.  She might do well on this and the braf in the combo has some brain met activity.

            Erinmay22
            Participant

              You could try an anti-pd1 trial also.  I started Z end of May and was on it until mid Sept when my scan showed progression.  I felt like the tumor grew pretty fast!  I did surgery to remove it.   Now on Ipi.  Have had 2 doses so far…  

              Best of luck!

              Erin

              Erinmay22
              Participant

                You could try an anti-pd1 trial also.  I started Z end of May and was on it until mid Sept when my scan showed progression.  I felt like the tumor grew pretty fast!  I did surgery to remove it.   Now on Ipi.  Have had 2 doses so far…  

                Best of luck!

                Erin

                Erinmay22
                Participant

                  You could try an anti-pd1 trial also.  I started Z end of May and was on it until mid Sept when my scan showed progression.  I felt like the tumor grew pretty fast!  I did surgery to remove it.   Now on Ipi.  Have had 2 doses so far…  

                  Best of luck!

                  Erin

                Cooper
                Participant

                  You might want to look at the braf/mek combo.  You can see a webinar on it here:  http://www.melanomainternational.org/news/dualtherapy1.html 

                  It seems to be more durable than zelboraf alone.  Temodar is a type of dacarbazine and an older drug.  She might do well on this and the braf in the combo has some brain met activity.

                  Cooper
                  Participant

                    You might want to look at the braf/mek combo.  You can see a webinar on it here:  http://www.melanomainternational.org/news/dualtherapy1.html 

                    It seems to be more durable than zelboraf alone.  Temodar is a type of dacarbazine and an older drug.  She might do well on this and the braf in the combo has some brain met activity.

                    deardad
                    Participant

                      HI Travis,

                      Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife? 

                      Stay positive and keep fighting.

                      Nahmi

                      deardad
                      Participant

                        HI Travis,

                        Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife? 

                        Stay positive and keep fighting.

                        Nahmi

                        deardad
                        Participant

                          HI Travis,

                          Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife? 

                          Stay positive and keep fighting.

                          Nahmi

                          Theresa123
                          Participant

                            I have grown tumors on every thing I have tried- including 4 clinical trials.  I am still here.  My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over.  You never know what will help.  Even failures.  Don't give up.  God Bless.

                            Theresa123
                            Participant

                              I have grown tumors on every thing I have tried- including 4 clinical trials.  I am still here.  My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over.  You never know what will help.  Even failures.  Don't give up.  God Bless.

                              Theresa123
                              Participant

                                I have grown tumors on every thing I have tried- including 4 clinical trials.  I am still here.  My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over.  You never know what will help.  Even failures.  Don't give up.  God Bless.

                                rrrule32
                                Participant

                                  Hey Everyone,

                                  Thank you for your thoughts and advice.  I am looking into PD-1 and a couple other trials.  The only problem is, we don't know if her brain mets have progressed.  If so, that makes things even more difficult.

                                  Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive.  We speak with her oncologist on Friday.  Even that feels like an eternity away. 

                                  Again, thank you all for your help and kind words.  Hopefully something comes up that helps.

                                  Travis

                                    Caretaker
                                    Participant

                                      Hi, Trevor,

                                      My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.

                                      Please keep sharing – I'll do the same.

                                      All best,

                                      Caretaker

                                      o2bcheri
                                      Participant

                                        hi…

                                         

                                        i am so sorry to hear this…

                                        when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…

                                        i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is

                                        healing a lot of people with only good side effects…

                                         

                                        it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site

                                        and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the

                                        results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..

                                         

                                        if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…

                                         

                                        sending big hugs and hope for healing..

                                         

                                        xxxx

                                        o2bcheri
                                        Participant

                                          hi…

                                           

                                          i am so sorry to hear this…

                                          when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…

                                          i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is

                                          healing a lot of people with only good side effects…

                                           

                                          it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site

                                          and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the

                                          results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..

                                           

                                          if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…

                                           

                                          sending big hugs and hope for healing..

                                           

                                          xxxx

                                          Cooper
                                          Participant

                                            This is spam.  I would not trust it.

                                            Cooper
                                            Participant

                                              This is spam.  I would not trust it.

                                              Cooper
                                              Participant

                                                This is spam.  I would not trust it.

                                                Cooper
                                                Participant

                                                  This is spam.  I would not trust it.

                                                  Cooper
                                                  Participant

                                                    This is spam.  I would not trust it.

                                                    o2bcheri
                                                    Participant

                                                      no.. this is not a spam… its real… i know several people personally who have healed from it..

                                                      i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…

                                                      its all natural.  cannot hurt.. the people are wonderful… are not about $$ at all… 

                                                      the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..

                                                      it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed…. 

                                                      as i said… the owner of the co even offered to give it to my daughter at no cost for her MS..  he is a wonderful human being… 

                                                      another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…

                                                      she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful… 

                                                      there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..

                                                      the website is very outdated… because they are understaffed.. and spend their time helping people ..

                                                      i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..

                                                      it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone… 

                                                      no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…

                                                       

                                                      XXX and prayers for everyone here… 

                                                      o2bcheri
                                                      Participant

                                                        no.. this is not a spam… its real… i know several people personally who have healed from it..

                                                        i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…

                                                        its all natural.  cannot hurt.. the people are wonderful… are not about $$ at all… 

                                                        the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..

                                                        it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed…. 

                                                        as i said… the owner of the co even offered to give it to my daughter at no cost for her MS..  he is a wonderful human being… 

                                                        another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…

                                                        she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful… 

                                                        there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..

                                                        the website is very outdated… because they are understaffed.. and spend their time helping people ..

                                                        i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..

                                                        it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone… 

                                                        no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…

                                                         

                                                        XXX and prayers for everyone here… 

                                                        o2bcheri
                                                        Participant

                                                          no.. this is not a spam… its real… i know several people personally who have healed from it..

                                                          i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…

                                                          its all natural.  cannot hurt.. the people are wonderful… are not about $$ at all… 

                                                          the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..

                                                          it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed…. 

                                                          as i said… the owner of the co even offered to give it to my daughter at no cost for her MS..  he is a wonderful human being… 

                                                          another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…

                                                          she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful… 

                                                          there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..

                                                          the website is very outdated… because they are understaffed.. and spend their time helping people ..

                                                          i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..

                                                          it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone… 

                                                          no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…

                                                           

                                                          XXX and prayers for everyone here… 

                                                          Cooper
                                                          Participant

                                                            This is spam.  I would not trust it.

                                                            o2bcheri
                                                            Participant

                                                              hi…

                                                               

                                                              i am so sorry to hear this…

                                                              when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…

                                                              i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is

                                                              healing a lot of people with only good side effects…

                                                               

                                                              it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site

                                                              and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the

                                                              results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..

                                                               

                                                              if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…

                                                               

                                                              sending big hugs and hope for healing..

                                                               

                                                              xxxx

                                                              Caretaker
                                                              Participant

                                                                Hi, Trevor,

                                                                My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.

                                                                Please keep sharing – I'll do the same.

                                                                All best,

                                                                Caretaker

                                                                Caretaker
                                                                Participant

                                                                  Hi, Trevor,

                                                                  My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.

                                                                  Please keep sharing – I'll do the same.

                                                                  All best,

                                                                  Caretaker

                                                                rrrule32
                                                                Participant

                                                                  Hey Everyone,

                                                                  Thank you for your thoughts and advice.  I am looking into PD-1 and a couple other trials.  The only problem is, we don't know if her brain mets have progressed.  If so, that makes things even more difficult.

                                                                  Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive.  We speak with her oncologist on Friday.  Even that feels like an eternity away. 

                                                                  Again, thank you all for your help and kind words.  Hopefully something comes up that helps.

                                                                  Travis

                                                                  rrrule32
                                                                  Participant

                                                                    Hey Everyone,

                                                                    Thank you for your thoughts and advice.  I am looking into PD-1 and a couple other trials.  The only problem is, we don't know if her brain mets have progressed.  If so, that makes things even more difficult.

                                                                    Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive.  We speak with her oncologist on Friday.  Even that feels like an eternity away. 

                                                                    Again, thank you all for your help and kind words.  Hopefully something comes up that helps.

                                                                    Travis

                                                                Viewing 11 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.